hi I am new here. I might have joined this site before . Don't remember oh well. I had sugery Sept.2008 on left knee.Been doing ok.Knee gets stiff and swells at times.Had another MRI in Sept.2009.Will have MRI every six months for next two years to make sure it does not grow back.Was supposed to have had MRI done back in May but have been taking care of my Mother with my sisters. Hope to hear from someone

Hi, Peglady,I want to welcome you to the chronic pain forum of Healing Well. Unfortunately, I don't know much about pvns, but someone who does will hopefully come along. I think I've seen some old posts about it, so you may want to do a search and see what comes up.

This is a great support group, but I don't think I hear much about pvns. That doesn't mean we can't learn, but you may have to teach us!

Good morning. My name is Dani. It is very nice to meet you. I do hope you decde to stick around and let us get to know you better *huggs* This is a wonderful place for knowladge, support and understanding! Though I know nothing of most types of conditions, I am sure someone will stop by with ideas! Again, a big welcome! We are glad you could join us.

I hadn't heard of this disorder either so did some searching. Below is a short description of what I found. It sure does sound painful and also that getting a diagnosis can be very difficult. I hope you have a great medical team but it sounds like you have.

I can't remember ever hearing someone talk about this on the forum but then again that's no promise that they haven't been here...lol Even so, this is a place where anyone with chronic pain can find compassion, friendship and support with day to day living. It's hard when pain places limitations on us and changes your life totally, but with loving people around you it can make our journey not only tolerable but most likely joyful!

What types of limitations do you have? Are you in 'remission'? Have you had surgery? I know...I'm full of questions...always. But I do care and I hope you stick around and join the people here who truly understand what you're going through.

Pigmented villonodular synovitis (PVNS) is a slow growing, benign, and locally invasive tumor of the synovium.The most common location is the knee . It is also found in other joints such as the hip, ankle, and elbow. In young people it may present as unexplained hip pain.

PVNS presents with acute episodic attacks of pain and swelling. Patients may have mechanical symptoms (locking and catching). When synovial fluid is aspirated from the joint, it is hemorrhagic and dark brown. A biopsy is diagnostic. The differential diagnosis is primarily to separate PVNS from rheumatoid arthritis. Unlike PVNS, RA tends to affect multiple joints and be symmetric.Play fair. Don't hit people. Say you're sorry when you hurt somebody.~Robert Fulghum

This is what happened to me. Pigmented villonodullar synovitis. Is an autoimune {body attacking it self } there is a change in the synovium fluid in the knee and there is this abnormal growth going on in the knee.The fluid in the knee can be a rusty orange color.Small noduals are also usually forming in the knee . Three years ago I started having problems with my left knee. Over time I found it hard to straighten my knee after kneeling.Eventually I would have to turn my leg and pop it to straighten it out.After that it would swell once in awhile.In the spring of 2008 I went to an orthopedic doctor who specializes in knees to get some answers.Had xrays done and was put on antinflamatory. Was told to come back to see if this helped. IT DIDNOT.Doctor sent me to see physical thyrapist who is in the same office.That same day.Did what he told me to do but there was a little discomfort.At the end of thet first session the therapist iced my knee which I could not straighten out.He had to put a wedge under my knee.Well when the ice was on a few minutes the pain started and got so bad they had to go across the hall to get the doctor I had just seen.He could not believe what was happening. I walked out with a very painful limp.He sent me for an MRI.Saw same doctor a few days later and he showed me my MRI on his computer and saidhe wanted to do surgery right away.Two weeks later I had arthroscopic surgery on my knee.It was more then they thought.It had grown over my tendions above the knee also.Had physical therapy three times a week for 2 to 3 hours each session for 6 weeks. My knee still swells a couple of times a week and has started getting stiff again. Had an Mri done in Sept.2009 and will see the doctor soonto talk about the results. The pain is manageable. Could be worse.

I too have PVNS of the knee (mine is the right knee). I hear everything you say in relation to this awful disease! The pain in my knee today is the worst it has been in 6 yrs! I have had arthroscopy, yttrium (radiation) injection and know that I will need the full open op to remove the tumours but I have 3 little boys 2, 4 and 7 and am separated so at the moment it is just a matter of trying to live with it - but it is getting very hard. It affects every moment of every day and wakes me every night. I live in Western Australia, am a 38 yr old female and a busy Mum. I have just joined the pvns group on facebook also & its great to know that I am not alone & even though our disease is rare, that there are others to offer advice on how to live with the disease that no one has heard about - even dr's! My thoughts are with you PegLady.

Hi Aussiepvns, Welcome to this site.I am just trying steriod injections for now.My knee still swells. But pain is not to bad.I see you are a Mom of 3 little ones. It must be very difficult to get thru the day for you. I try to keep a positive attitude . I not to feel sorry for myself and except my limitatioms.Its not easy.I look forward to your posting here.

Just wanted to say welcome to Peglady and AussiePvns. I'm am a RA sufferer so can relate to the fluid aspect but not the growth...ouch. Can they offer any medication to help with the swelling or only steroids? Does the fluid buildup also cause damage like RA or is it the tumour the causes the damage? Sorry to pester you with questions, just interested.But a big hello to you both, please come and chat anytime, golitho

To golitho, Hi. .Pvns is caused by something going wrong in the body.The body attacks itself similar to RA. If left go and not managed it can eat away at the joint. Its very rare.You can have the fliud drained.Surgery is also an option.Sometimes joint replacement has to be done.Antinflamitories help.Lyrica at night hepls to get a good nights sleep.hope I answered your questions.

Hi! Just joined the site!I too hve pvns in my right knee! I had an arthroscopy last Jan, where most of it was removed. I then searched for an oncologist to gve me 20 low dose radiation treatments last May! I am now waiting to hve my follow up mri nxt Mon, to see if it has regrownOr not! I can tell I still hve the disease as many of the symptoms still presentThemselves. I hve everything crossed tht I will hve no re growth!Many blessings

Hi Minnie. Welcome to the chronic pain forum. I'm sorry you have the problems with your knee. I hope there's no regrowth. I'm sorry to tell you, but you've replied to an old subject here. Could you go to the first page, click on new post and introduce yourself so we can give you the proper welcome?

It appears that you have indeed stumbled upon one of our older post here.

I have provided a link here to our home page of the "Chronic Pain" forum so that you can post a "New Topic" and introduce yourself. You will get more exposure this way and we would love to visit with you.

After you get to the home page by using this link.....just click the "Post New Topic"...and write away!....tell us as much as you can about yourself and what brought you here. If you have any problems finding your way, or find it difficult on how to navigate the forum, just ask and we will be happy to show you the way.

Hello all with PVNS. I too am a sufferer of the disease however I have high hopes that mine is the localized type in which it will not reoccur. For those of you that have posted on here with reoccurring PVNS I highly recommend you read this article about it because it requries someone with seriously good skills to get rid of it completely... if not, if could require an entire knee replacement. READ THE ENTIRE ARTICLE.

I have to say that I am seriously hoping I don't get it again! My surgery was last September and I am still recovering, I did 3 months of physical therapy (which got expensive) and now I'm working out on my own. Squatting down to pick things up have become a serious task for me and me knee normally hurts for a few days afterwards. Does anyone have any positive news about fully recovering from PVNS surgery with no pain in the joint? And if so, did you just have to work hard and deal with the pain until the muscle reformed? I would love to hear from someone who had PVNS in the knee and has fully recovered so I can have a little bit of hope. Most everything has gone back to normal except if I were to squat or sit on my legs (causing my knees to bend all the way).

Hello RR and welcome to Healing Well's chronic forum. I have edited out the web address you put in your post as this is against forum rules. If you would like for members to read this article then you may make your email address available in your profile and they can contact you VIA email to get the address. Only members can see your email address in your profile.

I am also going to ask you to start a new thread of your own to introduce yourself. You picked up on a very old thread that was started here some time ago. With it being an old thread very few people will see it and give you a proper hello.

Please make note to take a look at the forum in place here at Healing Well. Thank you.